Wednesday, September 26, 2012

I focus a lot on what I can do, and try to stretch that every day. Interacting with officialdom, like trying to fill out a Social Security application for disability insurance makes me pay attention to the ways I can't do stuff that is ordinary. It's a disheartening process to acknowledge that, sure, I can lift a 50lb dumbbell the couple of yards it takes to get it to a bench and back, but I couldn't carry it downstairs for love or money. Nor stand for six hours. Nor can I read long detailed text with ease. That last is the hardest admission to make at the moment.

I suspect there's a missed opportunity in the way the social security net is structured here. To be clear, I only pass the first hurdle because I paid a lot of tax when I was working. But the insurance incentivizes staying disabled, instead of rewarding recovery. This seems medically and economically dumb.

Whatever. The conflict between thinking optimistically about my capabilities and thinking realistically about my capacities is raw today.

Monday, September 17, 2012

On an immediate and obvious level, my balance is very poor these days. Walking now is quite like walking while drunk off my ass; I stagger and weave and bump into things, especially if I'm not concentrating or I'm doing something extraordinary like talking. As an added bonus, I bruise easily, too (thanks, Aspirin!), so my upper arms are particularly beautiful.

I can't tell why my balance is so poor (apart from the blindingly obvious because you have brain damage resulting from a stroke, dumbass). I maintain that my sense of balance is still good, that I know when I'm going over, but that it is muscular weakness on my right side and my brain still expecting dead bits to control my right side that fails to prevent the fall from happening. This is an optimistic view: it suggests that as I strengthen my right side and keep doing coordinated movement with it, my brain will gradually learn to use not-dead bits to control muscles that keep me upright, and maintaining balance will become less of a conscious activity.

This view might be wrong, and the neuroscience facts I learned 20-30 years ago would say that it is wrong. It's possible that I will always require conscious mental intervention to stay physically upright. Video game controls tend to give the lie to that thesis, though, if you've ever played a game obsessively enough.

Somewhere between the two is the possibility that it will take too long for an adult brain to sustain the level of intent attention that making balance automatic requires. In this view, I will reach a point where my walking is good enough for my brain to be satisfied, and it won't improve further. The trick to avoiding this seems to be to keep my mind dissatisfied and hope that it influences the brain to continue adapting. Same deal with my eyes: if ever I get too used to the double vision, the neurologists end up being right, and my vision stops improving.

All of which plays into another issue of balance: how much time do I spend on recover versus how much time do I spend just accomplishing the task at hand. I can stagger quickly, or walk more correctly slowly. This affects almost everything: when I use my right hand (for example typing this), am I doing so correctly or quickly? Correct doesn't become quick without time and effort, especially at 41.

The intention tremor in my right arm and hand makes this choice even more pronounced: clearly, it's worth taking time to lift a glass or write with a fountain pen, concentrating on not having the tremor. Sometimes, though I'm just thirsty, or I just need to get a phone number down quickly and don't have a computer right there. That's when I have to compensate for the tremor, and hope that I'm not reinforcing it.

Furthermore, I think about work-life balance quite a lot. I am lucky to have the opportunity to focus on recovery, but soon I'll be looking for work (or student loans and work), and I wonder how I will ever have time to keep up the exercise I'm doing and sustain a paying job. Long before I had the stroke, I thought that American (and British) working practices were insane, and I think so even more now. Whatever work I do in the future must allow me enough time to return to full function.

Finally, I wonder about the balance to be struck between being disabled, and looking disabled. The facial palsy is a strange help here, as is the occlusion in one lens: I look as if I am disabled in the head somehow. That seems to be picked up on more than my walking stick, where although I look increasingly muscular and buff (huzzah!) I am actually more impaired by the physical than visual (probably; it's hard to quantify). The net result is that sometimes I do need help, but not necessarily where and when an observer might think. I'm new to the term and concept of invisible disability, and honestly never thought I'd be looking at it from this side. But then I never thought I was going to be disabled at all, more fool me!

Thursday, September 13, 2012

I got screamed at on my way home today, by a precious little darling who attends the Frank Sinatra High School for the Performing Arts. I don't mean abusive yelling screamed at, I mean OMG there's a monster, run away! screamed at.

Tuesday, September 11, 2012

Monthly update time! It's 11 months since I had a stroke, and 11 years since I first wrote a piece called "Hello from a new New York" in the wake of the WTC destruction. The city is new again, but because my brain is damaged, not the city nor the psyche of the whole country.

I've written quite a lot about the progress I've been making in my effort to recover, and with the occasional exception, I hope I have been as positive as my recovery to date has merited. I return home to this city in a lot better shape than I left it, thanks in no small part to the friends and family who succoured me when I needed it most. But I realise that I have had a shorter-term goal over the last months: be well enough to return to New York.

That goal has been accomplished, but it has left a gap I didn't know had been filled until I felt the lack. I am not joking, nor lying when I say that I intend to walk on my hands again, but as a goal it is far more distant than I need, and although I can keep working towards it, it's not enough. Likewise get stronger,swim further, or walk better are too nebulous to be of much use. I'm working on all those things anyway, because I don't like the alternative.

I have an idea what the new goal should be, and it's almost orthogonal to recovery, but I suspect that if I fulfill that goal while doing all the other stuff I'm doing, then it will prove worthwhile. In the meantime, suggestions (facetious, fanciful or fantastic) on a postcard...

It's hard to judge my recovery compared to last month, since the context shift has been so huge. Not only, for example, have I had to deal with a new gym with weights in lb. not kg (arithmetic is hard!), but I have redesigned my workout to use more dumbbells, which are more challenging to use anyway, go to Pilates three times a week with a much more fierce instructor, and make do with a murky, chemical-filled 22m pool. Who makes a 22m pool? People who hate, that's who.

Easier instead to look at some of the victories and challenges New York has had to offer in six days:- I got around on the Subway, at first with a friend, but after the first day on my own. Victory! Some interchanges are hard (Canal St., 59th and Lex), and by and large people are even worse at offering me a seat than in London. I think I am not helped by the fact that I look in pretty good shape. Conversely the facial palsy helps here, as does the stick, but I find myself thinking "I'm not carrying this thing for fun, you know!" rather a lot. Perhaps I should get a t-shirt.- I took my laundry in and collected it. Victory! The first non-food thing I purchased in NYC on my return was a laundry bag with shoulder straps, which I also used to pick up friends' CSA share. Both the veg and my laundry were bastard heavy. Much more so than a year ago. Manageable, but tough.- I went shopping on my own to Pearl River, and got what I needed. Victory! I was so damned tired though, after Broadway and the Subway, and cooking myself dinner that I was in bed at 9:30pm, and asleep by 10pm. Not to mention the fact that I had had to resort to the Chinese emporium for white people because my vision was too poor to pick out a useful store when I had an hour to spend in Chinatown. That has a lot to do with the parlous state of my glasses (new ones arriving soon!) but the fact remains that my vision is pretty poor.- I navigated a busy Brooklyn street in the dark and wet. Victory! I was with friends, and I nearly went over once, but caught myself before either face-planting or hitting anyone else. It was hard, and substantially harder after even one meagre glass of wine. I have become a very cheap date.

One of the things I have been wondering about has been prompted by the Paralympics, where there is a class for moderate impairment of the whole of one side. I have that. It remains to be seen whether I am sufficiently impaired to qualify for the actual Paralympics in RIo, and at 45 I shall likely be too old for any of the sports that interest me (i'll remain a spectator for the wheelchair rugby, thanks), but it has come as a surprise to me that I can work that hard.

Qualification aside, what I have been wondering is essentially whether it gets any easier. When I walk, swim, or even sit upright I am consciously getting my right side to work. I am better at it, and am better at doing something else while spending some concentration on not falling over, but at a conscious level, I am working. This is visible in many ways, but two are most obvious: if I am distracted when walking, I look even more drunk than normal; when I'm eating, I tend to eat to the exclusion of all else: it is quite difficult to multitask when I'm cramming foodstuffs in my pie-hole. I don't yet know if any of the gains I have made so far will ever be automatic. I believe they will, but that it will take years, and I can't hide from the fact that I may be wrong.

This makes it occasionally galling to be in good shape. I have buffed up because I had to. If I hadn't, I would still be using a walking (Zimmer) frame, and labelled a falling risk. My legs look great because it takes a frankly ridiculous amount of effort to stand upright. Make no mistake: I am very happy to be in better shape than I have been for years, but to be in good shape and be disabled regardless challenges a lot of assumptions in the able-bodied, and I'm afraid that Americans, even New Yorkers, are pretty ignorant about disability, vide the almost complete lack of Paralymic coverage here..

So, New York is as challenging as I thought it would be. It's providing me with lots of opportunities to master my fears, both rational and irrational, as well as lots of opportunities to be humbled and grateful, both to strangers and to friends. Who could ask for anything more in life?

Friday, September 7, 2012

Yesterday was busier perhaps than I had planned, but a good first full day home. I re-awoke my gym membership from suspension, worked out for a bit, and checked out the pool on the other side of the block. It's not an ideal pool, but it will do the trick, and it's not insanely expensive if I pony up for a year. In fact, the gm and pool memberships combine to slightly less than what I was paying in Dorset. Sadly, the staff at the Sherborne Sports Center were a lot more awesome than much of the staff here, but the gym is friendly without being too full of scary scary muscle Marys. Except me.

Then onto lunch and a delicious Thali, and a little shopping to get a laundry bag that has two back straps. Essential for balance from now on, and I had a secondary task to do with it. Through al this, I had a sanely solicitous guide. The 59th St interchange can be hairy if you're able-bodied, so it was good to have someone with me for the journey.

Home after that, and immediately on to pick up the CSA share that some other friends cant pick up this week (because they're in CA) using the aforementioned laundry bag. It was still bloody heavy, but quite manageable, and promises to be delicious. The apples already are. As soon as the next sign-up period rolls around I will be joining. There is no good reason not to.

Finally I was going to put my feet up and watch Murderball only to have a moment of sheer, unadulterated terror: I was not sure I could remember how to work the TV and attendant bits. The ignominy! It turns out I remembered just fine, Muderball isn't available streaming, it's at the top of my queue now. and I watched the School for Scoundrels instead, which was charming.

On balance a good, full first day back with exercise, friends and a final flop.

Thursday, September 6, 2012

I arrived home in New York last night. Of course, there's no going home again, things were naturally more different in me than in my apartment and neighbourhood, but it felt great to be sitting at home, chilling on my couch with some Lebanese salad, chatting with Bret, almost as if the last eleven months hadn't happened.

That's a danger: slipping back in to the same patterns of living that ended up with me having a stroke (by which I do not mean chatting to Bret). Given how stark the consequences are when I don't exercise, and how within a day or two, my motor control gets worse and I start to walk worse, and so on, I don't think that's going to happen.

Negotiating JFK was interesting, if awkward, given that my bag was horribly heavy (so much so that I wasn't able to get it all the way up the stairs; another one I owe Bret).

The best part of it, from my perspective, was immigration. Since I was out of the country more than six months, I could be considered to have abandoned my residency, and they might have taken my Green Card away. Since it took me over nine years to gain residency and I have every intention of becoming a citizen when I can, this would have been a very bad thing.

I was prepared, though: I had medical statements and similar documentation, including a stellar letter from my NHS physio, to show that I had good reason to be out of the country so long. If necessary I had them to hand for the border agent (a veteran of the WTC rescue mission), and my friendly lawyer took a break from evicting grannies to find out that if they did seize my Green Card, I could get it back.

The whole thing should have been very worrying, and I was certainly concerned; I had prepared all the paperwork, after all. But it didn't really ever bother me right up until the moment of truth. I managed, instead, to identify whatever happened at the border, given that I had done the prep, was outside my control and beyond my ability to influence further, and so there was no point worrying about it. So I didn't.

When it came to it, the officer was friendly and helpful, and didn't want to see any of the evidence I had to hand. I'm still a legal permanent resident, on the long road to citizenship.

Subsequently, it has occurred to me first that my facial palsy and walking stick are fairly big signs that are rather hard to fake. Second, that the facial palsy in particular provokes all sorts of assumptions. Most often, and most irritating, is the assumption that because my face is partially impaired, I must be stupid. I say that it is the most irritating, because it really does not thrill me to be thought stupid, but it's also, sometimes, to my advantage and when that's the case, I make the most of it.

I'm not saying that I hammed up being a dummy for the agent, nor that he thought I was mentally impaired (we talked, after all, about working for Google), but to be perceived as less threatening because of a disability is sometimes quite useful, and you had better believe I'm going to use it, because there's quite enough of everything else that got harder.

Anyway, it's almost 7am in New York. It's going to be a hot day, and I'm off to sort my gym membership out.

Pages

A Stroke Diary

I had a bunch of strokes in October 2011, and this blog is about my ongoing journey of recovery. If you take anything away from here, I think it should be this: you can recover from brain injuries, you should not believe pessimists, even your doctors, but it's up to you to do the hard work.

Why "Scratch One Life"?

Initially, I thought that after my strokes, my old life was over; in many ways it is. The experience has taught me to look deeper, though: scratch the surface of my old life and you find the new one just out of sight beneath it. Now I'm trying to bring the new life to the fore, all shiny and tender.